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Category Archives: Hepatitis B Advocacy

300 Million Reasons, advocacy, HBV, Hepatitis B Advocacy

2022 Advocacy Year in Review

As we wrap up 2022, we hope you’ll take some time to look back and celebrate the exciting and important hepatitis B policy and advocacy achievements of the past year! Community partners and grassroots advocates around the world came together to advance our shared advocacy goals and working toward the elimination of hepatitis B.  

  

 

 

 

 

 

 

 

 

 

 

 

This year we celebrated big wins in the U.S. including:  

Congressional Funding for Pennsylvania Center of Public Health Excellence  

With the passage of the Fiscal Year (FY) 2022 Omnibus Appropriations Act in March, the Hepatitis B Foundation received $475,000 to create a Center of Public Health Excellence focused on hepatitis B elimination by providing expert resources, advice, training, capacity building and technical assistance for state and local partners on how to best prevent, treat and control hepatitis B, and to increase the rate of adult vaccination and testing for hepatitis B. The Center of Public Health Excellence was one of nine community projects that Congressman Brian Fitzpatrick secured funding for in the FY 2022 Omnibus. 

 

Implementing Universal Hepatitis B Recommendations   

In April, universal hepatitis B vaccination for adults aged 19-59 became official recommendation. HBF immediately embarked on a dissemination campaign to raise awareness of the new guidelines amongst various stakeholder groups. HBF also launched the Hepatitis B Vaccination and Screening Advisory Council, which is comprised of key stakeholders from the provider and patient advocate communities and hepatitis B experts. The Council held a two-day meeting in June to develop implementation strategies for universal hepatitis B vaccination and screening (expected in 2023) and will publish its findings in a white paper. 

 As our network of grassroots advocates and storytellers continues to grow, we have also expanded our involvement in state/local advocacy and global advocacy. Our ongoing advocacy efforts in the U. S. include calling on Optum to restore the hepatitis B treatment Vemlidy back to their health insurance formulary. Globally we continue to put pressure on Gavi to move forward with implementation of hepatitis B birth dose in member countries, urging members of Congress and President Biden to help end hepatitis B discrimination in the U.S. military, recognizing National African Immigrant and Refugee HIV and Hepatitis Awareness (NAIRHHA) Day in the U.S., advocating for universal adult hepatitis B screening, and increasing funding for hepatitis B and liver cancer. 

 

Updated U.S. Public Health Service Corps Medical Standards  

The U.S. Public Health Service (USPHS) Commissioned Corps announced in December that it is updating its medical standards to accept future applicants living with chronic hepatitis B and HIV. Previously, HIV and hepatitis B infection were both considered disqualifying medical conditions. The Hepatitis B Foundation became aware of this issue in late 2020, when an individual with hepatitis B applied to serve but was denied due to their hepatitis B infection. Working alongside partners, we successfully advocated for a change in this policy by meeting with senior administration official and Congressional champions, and getting language included in the FY 2022 House Labor-HHS Appropriations report urging the USPHS to allow officers with hepatitis B to serve in the Commissioned Corps.  

  

Check out the report to learn more!  

https://www.hepbunited.org/assets/Advocacy/5d40b3bcc9/2022-HBU-Year-in-Review-Final.pdf 

  

From all of us at the Hepatitis B Foundation and Hep B United, THANK YOU for your continued support and dedication to advocating for hepatitis B awareness, prevention, treatment, and research and combatting stigma and discrimination. We are so proud of what the hepatitis B advocacy community achieved this year, and we look forward to continuing to work together to build on the momentum of these accomplishments in 2023! 

advocacy, Hepatitis B Advocacy, Hepatitis B Awareness

CHIPO Partner Highlight: Illinois Public Health Association

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is co-founded and led by the Hepatitis B Foundation and is composed of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the US. Over the past year, CHIPO has grown its membership to include nearly 50 community-based organizations and federal agencies, all of which are working to meet the common goal of raising awareness about hepatitis B among African immigrant communities, and increasing rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our newer partners, the Illinois Public Health Association, and their Outreach Coordinator, Monde Nyambe. Please enjoy a recent interview with Monde, as she describes her work, including successes and challenges, and the positive impacts she and IPHA have had throughout the state of Illinois.

 Could you please introduce yourself and your organization?

Monde: My name is Monde Nyambe, and I am the Outreach Coordinator for the Illinois Public Health Association, which is the oldest and largest public health association in the state of Illinois. I work specifically in the area of addressing hepatitis B among African communities around the state. IPHA has had a hep B grant for some time and the focus has actually primarily been on African communities – it was only in the past fiscal year that AAPI communities have been included in this grant as well. All of IPHA’s hepatitis B efforts do fall under the umbrella of the HIV/STI/viral hepatitis section. I started at the organization as an AmeriCorps member in November of 2020, and then was hired on to connect with African communities in the area, around the topic of hepatitis B. I am very glad to have had a role in really growing IPHA’s initiative and moving the outreach project along from the beginning – during my time here, I have built connections and made contacts with grassroots organizations and individuals, including a large and engaged group of African pastors in the area, who are vital to sharing important and valuable health information.

Could you tell me a little bit about what some of IPHA’s programs are that specifically address hepatitis?

Monde: A lot of the organization’s focus has been on educating institutions and utilizing African community members who are influential in their spheres to help raise awareness and educate community members about hepatitis B. One important undertaking has been to recruit MPH students of African descent to distribute materials and make connections, and to offer assistance with services – this has been quite effective. We have been able to utilize a partnership between a local Planned Parenthood and Merck Pharmaceuticals to meet community members where they are and to offer a sliding scale for hepatitis B vaccines. We have also been able to conduct outreach to ESL students at community colleges in the area and have been able to reach about 100 students in this way. This has been overall very successful and many of the students were quite engaged and had a lot of questions. One occasional barrier is that strict religious beliefs can sometimes impede open discussion of health issues like hepatitis B.

Which countries are primarily represented in your area’s African diaspora?

Monde: We have a huge Congolese community around Champaign and in Central Illinois, and there are many West African immigrants in the Rock Island area as well.

What are some of the biggest challenges in addressing hepatitis at the community level? How have you worked to overcome these? Are there any additional resources that would be helpful to have?

Monde: The biggest challenge is definitely awareness – people often do not realize that hepatitis B is a problem in their communities. Another challenge is finding individuals who are willing and able to do targeted health communication outreach (like the group of pastors mentioned previously). We have been able to do brief interviews with Facebook influencers, which have been helpful, and to build connections with passionate community members. One big lesson I have learned is to not be afraid to reach out to people that you may know personally and they in turn can reach out to their networks – personal relationships work well for this type of outreach!

Another big challenge in hepatitis B and health outreach to African communities is finding materials in the appropriate languages and dialects. Even after all my time in this country, I have not been able to find materials of any kind that are printed in my native language. Many times, materials are printed in standard languages like French, Swahili, and Amharic, but there are different versions of even those languages that many community members may not readily understand. Also, not everyone knows the official languages of different countries. If and when resources are created in a greater number of languages, it is important to pilot-test them in the communities to ensure that they are accurate and meaningful in the language as it is used in daily life.

Additionally, many people who are newly arrived to this country don’t know much about how to navigate the healthcare system here and don’t have health insurance. If they do have health insurance, they may not know that hepatitis B testing and vaccination are covered under their plan. One idea that might be helpful would be to have an easily accessible list of African healthcare providers or community health workers who are interested in serving their own communities. This might help people to feel more comfortable and that their healthcare provider relates to their personal experiences.

What do you think are some of the biggest barriers in raising awareness and addressing rates of hepatitis screening and linkage to care at the local, state, and federal levels? Do you think more could be done in these spheres to address this problem?

Monde: I think again that awareness continues to be the biggest issue here and that continued engagement with leaders in this area is important and crucial for advocacy. People need to recognize the consequences of not testing for, preventing, and treating hepatitis B. Leaders need to also continue to hear about disparities that exist in healthcare, such as the high rates of hepatitis B in African communities around the US. Encouraging more community members to be involved in grassroots advocacy can also go a long way toward policy formulation, increased awareness, and, importantly, more funding for efforts to combat hepatitis B. It would be great if some of the same energy and efforts that have been used in the HIV space over the past several decades could be used in the hep B space as well.

Do you see this issue as being connected to other concerns facing African immigrant communities?

Monde: Yes, definitely! High rates of hepatitis B are connected to economic status, English language proficiency, immigration status – even things like having knowledge of and access to public transportation to get to appointments on time is part of the issue as well. Understanding of cultural customs that may be confusing and pose challenges for those who are new to this country, like leaving a voicemail and navigating the phone systems of many doctor’s offices and clinics, should also be considered when ensuring that healthcare and health information are truly culturally and linguistically appropriate and actually accessible for all communities. The social determinants of health are important and must be considered in making decisions and designing everything from communications campaigns to policies.

What are your favorite parts about your job? What got you interested in this work?

Monde: I started out as a social worker and when I came to the US, became a nursing assistant. I worked in a nursing home, and, while in school, an advisor recommended a public health class to me and this changed everything! I started outreach work and really liked public health – I then became an AmeriCorps member and started my journey at IPHA! I have most enjoyed interacting with people from many different walks of life, answering questions, and offering guidance and clarity around hepatitis B. Seeing all different sides of the issue has been challenging and rewarding at the same time.

Thank you so much for taking the time to share your thoughts on your work and the role of IPHA in raising awareness and conducting outreach about hepatitis B to African communities across the state of Illinois. We appreciate all that you do!

Monde: Thank you!

advocacy, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Liver

CHIPO Partner Highlight: Great Lakes Peace Centre

 The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is co-founded and led by the Hepatitis B Foundation, comprised of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the US. Recently, CHIPO has started to expand its reach to communities in Africa and has welcomed new partners from the Continent. This month, in honor of Minority Health Month, we highlight a partnership between CHIPO and Great Lakes Peace Centre (GLPC) in Kasese, Uganda. CHIPO has recently provided GLPC with educational resources that are tailored for African communities, which GLPC is translating into local dialects and will use in a strategy to raise awareness and provide education about hepatitis B, primarily to rural women and youth in Kasese District. A recent interview with Bwambale Arafat, Head of Health and Policy Officer at GLPC, sheds light on some of the significant barriers that impede hepatitis B screening, prevention, and care in Uganda (and much of the African continent) and showcases some of the extraordinary work of GLPC on a host of issues, of which viral hepatitis is just one.

 CHIPO: Can you share a little bit about yourself? What is your connection to hepatitis?

Arafat: I work with the Great Lakes Peace Centre, which is a grassroots, youth-led organization, here in Kasese District, a rural area in Rwenzori region, western Uganda (near the border of the Democratic Republic of Congo, about 400 kilometers from the capital city of Kampala). Most of our work with hepatitis B is focused on raising awareness and providing education about the virus to women and youth in the area, who are the most important people to reach. We also engage in a lot of advocacy initiatives, as well as efforts to lower stigma and discrimination.

My personal connection to hepatitis B is the diagnosis of my uncle with hepatitis B and liver cancer and his death shortly thereafter. There was widespread misconception that he had been bewitched and poisoned by relatives. I have been working to try to dispel some of these myths and provide accurate information ever since. In 2021, I was honored as a World Hepatitis Alliance champion for hepatitis outreach work during COVID-19. I and GLPC are deeply committed to the cause of hepatitis B elimination by the year 2030.

CHIPO: Congratulations on the well-deserved honor! Can you share a bit about the work and goals of your organization?

Arafat: Due to its proximity to the Democratic Republic of Congo, Kasese feels the effects of war and conflict acutely, and the area is quite fragile. Peace and Conflict Resolution is the first of three priority areas for GLPC and is driven forward by the efforts and demographic dividends of young people. Health Promotion and Public Policy is the second priority area, which encompasses awareness and education about hepatitis, HIV/AIDS, malaria, and tuberculosis prevention, screening, and treatment, as well as nutrition assessments, counseling, and support, especially for mothers of children under five years of age. Water, Sanitation, and Hygiene is another topic of top concern, and initiatives in this sector included a hand-washing campaign for COVID-19. The last focus area under the Health Promotion umbrella is adolescent sexual and reproductive health, and especially promotion of education equity for menstruating young women and ending of stigma and discrimination around this, thus keeping young women in school for longer. Social empowerment happens through education, and people can donate to keep girls in school with financial support. The third organizational priority is to focus on climate change – GLPC distributes solar panels through public and private partnerships, as a great step toward sustainability and protecting the planet we share.

 CHIPO: What are some of the biggest barriers to hepatitis screening, prevention, and care in your community?

Arafat: As I mentioned above, the widespread presence of myths and misconceptions about hepatitis B, especially about transmission, is one of the biggest culprits in perpetuating the stigma and discrimination that still dominate the hepatitis B conversation and presents one of the biggest challenges to increasing screening and vaccination. Some ways that we are working to dispel some of these misconceptions are through our social media platforms, which all have huge followings by younger people. However, attitudes are very slow to change, and this is why the involvement of religious and community leaders in spreading accurate information and shifting the narrative around viral hepatitis is so important, and why personal testimonials and connections with people who are living with hepatitis B hold such power.

Other challenges to screening, prevention, management, and treatment of hepatitis B in Kasese include the enormous out-of-pocket costs of diagnosis and testing; the persistent lack of awareness among the general population – primarily lack of information, education, and communication; the lack of logistics and supplies for things like test kits and cold chain storage for vaccines; and the long distances and mountainous topography that make access to health facilities in larger cities difficult. Additionally, funding and resources from the government and other stakeholders remain inadequate, making it difficult to ensure that services will be available when they are needed. The Minister of Health and government of Uganda have created infrastructure to help with vaccination (they have provided 1 million USD for this reason), have recommended universal adult vaccination, and have also waived fees for viral load investigation. However, things like ultrasound scans, complete blood count panels, and other tests to determine when someone would need treatment for hepatitis are not subsidized. The government could also do a great deal more in terms of increasing awareness, investing money into management and care, prioritizing the birth dose of the vaccine to prevent mother-to-child transmission of hepatitis B, and addressing the stigma and discrimination so many living with hepatitis B routinely face.

Many infants also continue to be delivered by traditional birth attendants, who are not trained in preventing mother-to-child transmission of hepatitis B, and knowledge among community health workers in general is very low. There is also inadequate data and surveillance of the disease, and no records of screening, vaccination, or care are kept in the Health Management and Information System. There is a lack of clear guidelines around testing for the medical community and a lack of materials that can help to raise awareness and combat stigma.

We also really need to integrate hepatitis services into those that exist for HIV/AIDS. Machines that are used to test for HIV/AIDS can be recalibrated to also test for hepatitis. Electronic Health Records can be upgraded to include hepatitis B status. As awareness grows, patients can also hold health workers accountable for hepatitis testing, as they do now for HIV and syphilis. This conversation needs to start with the people themselves.

 CHIPO: How are you planning to use CHIPO’s materials and resources over the next year?

Arafat: We have a saying in Kasese: “When you talk in a foreign language, you talk to people’s heads. When you speak in their language, you speak to their hearts.” Our first priority is to translate CHIPO’s flip charts, takeaway cards, and guides for health educators into our local dialects of Lhukonzo and Runyakitara, in order to reach as many community members and stakeholders as possible. We will host four community educational events using the materials and in these events, will focus on hepatitis B overview, causes and prevention, common myths and misconceptions, and unmet needs in this area. These sessions will be moderated by NoHep Champions and Hepatitis Ambassadors, so that the community can hear from people with direct experiences of the disease and their voices can be amplified.

Additionally, we will host NoHep Champion Table Talks, which are informal discussions that will consist of young people living with HBV and pregnant women, who will share stories and build community. These talks will touch upon how people are doing physically, as well as with handling stigma, and will identify needed services, insights which can help to determine future programming and practices. These talks will also emphasize that no one is alone, and that hepatitis B is not a death sentence, but that people with HBV can live long and healthy lives. We will also convene community barazas (gatherings) with local leaders, including social workers, health workers, village health teams, hepatitis ambassadors, local council, and cultural, community, and religious leaders to conduct trainings on delivery of the educational materials. These will provide an opportunity to educate and invite open discussion. We will also hold continuing education courses on hepatitis B for healthcare professionals at health facilities, including community health workers, village health teams, and para-social workers. Finally, we are planning to compose a radio jingle related to hepatitis B that will be heard around the district.

Only 1 in 10 people in Kasese know their hepatitis B status. These materials can go a long way in changing that.

CHIPO: Thank you so much for your valuable insights and for all of the work you are doing! Do you have any final thoughts or messages that you would like to share?

Arafat: I would just like to mention our No Hep Mamas campaign, which we are also implementing for the prevention of mother-to-child transmission of hepatitis B. We are working to bring this campaign to more health facilities, and share this information in prenatal care settings, as stopping the cycle of transmission is truly the best way to eliminate hepatitis B.

CHIPO: Thank you so much again for your time today, Arafat, and we look forward to more inspiring work from you in the future!

Arafat: Thank you very much!

Hepatitis B Advocacy, Living with Hepatitis B

#Tri4ACure: From Hepatitis B Diagnosis to Advocating for a Cure

 

 

 

 

 

 

 

 

 

Meet Edwin Tan – a 29-year-old mechanical design engineer from Minneapolis, Minnesota! In 2014, Edwin was diagnosed with hepatitis B. Like many others living with hepatitis B, his diagnosis was a shock. Before his diagnosis, all he knew was that he was banned from giving blood to the Red Cross, but no one had explained the reason why. A routine blood test provided no explanations either, so his doctor decided to test for hepatitis B. The test revealed that Edwin was living with chronic hepatitis B.

After his diagnosis, Edwin decided to learn all that he could about the infection. Through his research, he found that one of the best ways to keep his liver healthy was through small lifestyle changes. Edwin began to pursue healthier life choices by increasing the amount of exercise he was getting and paying closer attention to his diet. Although he loved craft beer, he knew that drinking could be extremely dangerous to those with liver infections, so he willingly gave up all alcohol. Edwin’s dedication to a more active lifestyle led him to challenge himself by competing in local races and triathlons.

Edwin’s journey led him to realize that there is a lack of awareness about hepatitis B. He noticed that the stigmas facing those living with hepatitis B could take a physical and mental toll on an individual and impact how they viewed themselves. Edwin’s observations inspired him to reach out to the Hepatitis B Foundation to raise money and awareness for hepatitis B research, patient outreach, and education. Since his passion for racing was discovered due to his commitment to health after his diagnosis, it seemed appropriate for him to use his love of sports to fundraise for hepatitis B awareness and research! He hopes that his athletic achievements help others living with hepatitis B to realize that they are more than their infection.

Now, Edwin is training for a series of six races—triathlons, a marathon and an ironman – and we’ll be with him every step of the way! You can make a gift to support Edwin’s fundraising efforts here.

“I want to be a positive example against the stigma associated with Hep B and the shame that some people may feel for having it. Completing an Ironman, which is regarded as one of the most difficult one-day athletic events, serves as a good example that we each can accomplish anything we want as long as we believe in ourselves.”

To follow updates on Edwin’s journey, you can follow the Hepatitis B Foundation or Hep B United on Facebook. Be sure to use the hashtag #Tri4ACure!

Hepatitis B Advocacy, Living with Hepatitis B

Hepatitis B Discrimination in U.S. Medical Schools: What you Should Know

In 2013, an integral ruling by the United States Department of Justice (DOJ) took a major step towards ending one of the many forms of discrimination that hepatitis B patients face. The settlement made it illegal for medical schools to discriminate against students due to their hepatitis B status. Six years later, the words of

“Blind Lady Justice”

Thomas E. Perez, former Assistant Attorney General for the Civil Rights Division, still ring true: “Excluding people with disabilities from higher education based on unfounded fears or incorrect scientific information is unacceptable”. Unfortunately, many medical schools – both nationally and internationally – fail to acknowledge this.

Since the court settlement in 2013, we’ve received an increasing number of patient complaints regarding medical school discrimination. Some students completed all of their classes only to be told that they couldn’t participate in their clinical experience (which is a degree requirement) due to their hepatitis B status. Other students have had their acceptance to a school revoked because they tested positive for the infection. Both situations are considered illegal under the Americans with Disabilities Act (ADA).

What You Should Know:

  • You are protected by the law: Under Titles II and III of the ADA, it is illegal for entities, including schools, to discriminate against students based upon a disability like a chronic illness. In addition, institutions are required to make arrangements, policies, and procedures when needed in order to ensure that those titles are being followed.
  • You are not a threat: It is important to note that discriminatory policies are often outdated and should be unnecessary – in both schools and the healthcare field – as long as the appropriate procedures and precautions are followed.  
  • The Centers for Disease Control and Prevention (CDC) Recommendations are in your favor: In 2012, the CDC worked with us and a few other organizations to update their recommendations for managing healthcare students and workers with hepatitis B. Amongst those changes were no requirement of telling patients of a health-care provider’s or student’s hepatitis B status, using HBV DNA instead of hepatitis B e-antigen status to monitor infectivity; and, for those requiring oversight, a threshold value of HBV DNA considered “safe” (<1,000 IU/ml). They also state that “for most chronically  infected providers and students who conform to current standards for infection control, hepatitis B infection status alone does not require any curtailing of their practices or supervised learning experiences. “

What Discrimination Looks Like:

Sometimes, schools’ discriminatory actions are obvious but oftentimes they are not. Despite direction from the DOJ and requirements in the specified in the ADA, some institutions have not created standardized arrangements or policies for people who have hepatitis B. Other schools are not aware that turning away certain students based on a disability is illegal.

Discriminatory policies by schools may include:

  • Asking students to show proof of hepatitis B surface antibodies (HBsAb)
  • Revoking acceptance to the school based upon positive hepatitis B status (HbsAg)
  • Requiring undetectable viral load or e-antigen negativity for completion of clinical rotations

As an example of a discriminatory policy, Lehigh Carbon Community College states that: “The health care agencies for clinical experiences have specific health requirements that must be met by each student. The program requires proof of personal health insurance during enrollment in the nursing program. Admission to the program may be revoked upon review of these results. (1) Positive Hepatitis B Surface Antigen (2) Titer Levels for Hep B antibody level.”

This policy does not comply with the CDC’s current recommendations and seems to be a violation of the protections afforded by the ADA. You can view this policy on page 15 of their student handbook.

A good, non-discriminatory policy should be transparent and specific. One example of this is Rutgers University. The policy is in line with, and clearly references, the CDC’s most recent guidelines and provides a clear path on how to proceed based upon each student’s infections:

“Individuals who are found to be infected with HBV shall be counseled by the Student Health Service director or Occupational Medicine/Employee Health Service director in accordance with current guidelines from the CDC.”

You can view these guidelines under section H, category 40.3.5 of their policy website.

What To Do If You Face Discrimination:

If you believe that a school is discriminating against you based on your hepatitis B status, there are a few important steps you can take. First, try to schedule a meeting with the person who is in charge of the program, such as a director. This will help to quicken the response to your message and help facilitate change. Be sure to bring these formal guideline documents with you to help build your case: the CDC’s updated guidelines and the official DOJ/ADA letter to schools regarding hepatitis B discrimination. You can even highlight the sections that apply to your case. Hopefully, the school will realize their mistake and make the necessary changes to their policy!

If the school refuses to acknowledge your lawful protections, you can reach out to us at info@hepb.org and we will assist you. You can also file a formal complaint with the DOJ.

Hepatitis B Advocacy

National Public Health Week 2019: Let’s Create a Healthier World by Ending Hepatitis B

This week is National Public Health Week in the United States but this year’s theme – Creating the Healthiest Nation: For Science. For Action. For Health –  can be applied globally. Over 292 million people around the world are currently living with chronic hepatitis B, yet only 10% of patients are aware of their infection. In order to create the healthiest world possible, public health needs to address all threats to the public’s health – including those we don’t see.

How can we create a healthier world by eliminating hepatitis B?

  • Increase provider knowledge of hepatitis B – In the U.S. and around the globe, hepatitis B is often overshadowed by other infectious diseases, including HIV and hepatitis C. Because of this, there is a lot of confusion and misinformation about who should be tested and how to proceed if a person tests positive for the hepatitis B surface antigen. Educating healthcare providers about hepatitis B testing, management, and treatment, and helping providers understand the importance of helping high-risk patients know their hepatitis B status, is an important strategy. As early treatment and regular monitoring can prevent liver damage and lower a person’s risk of liver cancer, improved provider knowledge can help hepatitis B patients live long, healthy lives! Hep B United and the Centers for Disease Control and Prevention’s (CDC) Know Hepatitis B campaign has multiple resources for professionals, and the Hepatitis B Foundation lists international clinical guidelines for testing and treating patients.

 

  • Improve Vaccination Rates – One way to eliminate hepatitis B is to eliminate transmission. As the infection is most commonly passed from mother-to-child during birth, it is important for countries to adopt the universal hepatitis B vaccine birth dose – a policy that is widely credited with reducing this form of transmission even if the mother tests positive for hepatitis B! Under the universal birth dose policy, newborns receive their first dose of the hepatitis B vaccine within their first 24 hours of life. However, in the U.S., if the mother tests positive for hepatitis B, the child will receive the first dose of the vaccine and one shot of hepatitis B immune globulin (HBIG). According to the CDC and the Immunization Action Coalition, up to 95% of chronic infections caused by mother-to-child transmission can be prevented through this method!

 

While it is important to vaccinate newborns and infants, adults must be vaccinated too. In the United States, only about 25% – 30% of adults have completed all three doses of the vaccine. Completing the vaccine series is extremely important, as it takes all three doses, according to schedule, in order to receive long-lasting protection. As the infection can be spread through unprotected sex, sharing items such as toothbrushes and razors, or unsterile needles that could be used in tattoo parlors or medical settings, increasing the vaccination rate among this population is important in order to prevent transmission.

 

  • Encourage People to Get Tested – Hepatitis B can increase a person’s chances of cirrhosis and liver cancer, but when paired with other health conditions such as diabetes or hepatitis C, the risk for liver damage becomes even greater. As hepatitis B often has no symptoms, a person who is living with multiple health conditions may not realize that they need to be taking additional precautions to stay healthy. In addition, a recent study has shown that a large number of cancer patients have had past or present hepatitis B infections that were previously undiagnosed. Testing can help improve health outcomes for patients, as they can take the necessary precautions to prevent damage and doctors can make educated treatment decisions that would not negatively impact the hepatitis virus or cause it to reactivate.

 

To many patients, hepatitis B is not only a physical issue; it also has an emotional toll. From attempting to navigate the healthcare system to facing workplace discrimination, hepatitis B patients all over the world can face stress and mental distress. Cultural myths and stigma can negatively impact how infected individuals and their families interact with their communities and even each other. Addressing these issues is a major part of eliminating the infection once and for all. So, for science, for action, and for health, we must all work together to advocate for patients, protect our communities, and end hepatitis worldwide!

To hear real patients describe their struggles with hepatitis B, you can view our #justB story campaign.  

Want to help raise hepatitis B awareness during National Public Health Week? Join us on social media by using the hashtags #NPHW or #NationalPublicHealthWeek on Twitter and follow along as we participate in the American Public Health Association’s twitter chat on Wednesday, April 3rd at 2 pm!

Hepatitis B Advocacy, Living with Hepatitis B, Relationships

Patient Perspective: Living with Chronic Hepatitis B & Fighting it On All Fronts

 

This post is by guest blogger Mariam. Mariam works at a charity cancer hospital and is interested in philosophy. She is currently learning french and enjoys spending time by herself and the mountains. 

When you are first told that you have a chronic disease that is treatable but has no cure, you are suddenly confronted with an enemy on multiple fronts—you have to fight it within your body, inside your mind, your heart and in the outside world. Chronic hepatitis B: nearly 15 million people are living with it in Pakistan. In the world, 292 million people are silently suffering from this , and most are unaware (which is 9 out of 10 people globally). It is a tragedy that 2 out of 3 liver-related deaths are caused by this infection which is preventable and treatable. There are many reasons why this disease is prevalent in a developing country like Pakistan that lacks a proper healthcare system; where there are no pregnancy screenings or an effective mechanism to ensure babies are vaccinated against this. It’s an infection that can be transferred through blood (most commonly from an infected mother to her baby during delivery)  and sexual intercourse and  so it is not difficult to understand how this disease travels from one generation to another, silently. Elimination of viral hepatitis by 2030 is one of the millennium goals of the World Health Organization, but we cannot achieve this without dedicated efforts by all the stakeholders that include health-care professionals, patients, media, and policy-makers. I am primarily interested in sharing the patient’s perspective, in hopes that it will encourage others to fight this epidemic.

A Patient’s Point of View

The fact it’s a chronic illness means you are in for the long haul and you have to be prepared to take care of yourself by regular monitoring/medications (depending on what stage you are at) for the rest of your life. One can argue that’s bad but it’s not a big deal as we have people who suffer from high blood pressure, bad eyesight, or diabetes and they also have to regularly take care of themselves. The problem is that hepatitis B is an infectious disease, a fact that contributes towards stigma surrounding its diagnosis. Suffering from flu makes me feel like a hazard to others. Having an infection that I cannot get rid-off certainly makes me feel bad and, in a way, dirty. I have to be cautious and aware that my blood is hazardous for others and I have to be constantly aware of all the possibilities I can be harmful and ways to prevent it. It’s a progressive disease which can be treated at a certain point, so when you go to follow-up appointments, you feel like a ticking bomb is inside you and you need to be able to identify the period when the bomb goes off so you can treat the damage. Because current hepatitis B medications are most effective when there are signs of liver damage, the treatment is often only given during this phase. The inherent uncertainty makes you hate hepatitis B.

Fighting Discrimination and Stigma

Living in a conservative society, if you are one of the few fortunate ones aware of your diagnosis, how do you deal with it? I kept it to myself because I did not want people to define me through my illness. I did not tell my parents or friends because I did not want them to see me as ill or worse, to pity me. I needed time to process it without having to deal with other’s opinions and judgments. Three years ago, I was diagnosed with hepatitis B during regular pre-employment screening. I did not even know anything about this disease. I had a biopsy to determine the stage of the disease. Then I went to a few follow-ups. Unfortunately, after a while, I stopped because I did not want to think about this illness. I wanted to forget about it so I tucked it away, in the farthest corner of my mind. I did not know many people with whom I felt safe talking about this. Until one day, I was at a fundraising event for a charity cancer hospital where I got the chance to sit with a doctor. He was a stranger and a doctor, so in a way I felt safe telling him why I’m so interested in trying to understand where my country stands in the fight against hepatitis B—I told him I was diagnosed with it. At one point he asked me if I’m on treatment,  and I honestly told him I am supposed to be on follow-up. He said, “What do you mean, supposed to be?” That slight hint of disappointment made me feel I failed in taking care of myself. It’s easier to sound irrational inside your head but when you share it out loud, it does not feel nice. He told me that first, I need to sort out myself before trying to make a difference in the world of hepatitis B. I am grateful for the brief discussion with him which gave me the courage to think about re-scheduling my long overdue follow-up appointment. It gave me the clarity that I wanted to share my story with others in hopes that those who are fighting hepatitis know they are not alone. Sharing my story also helps me feel that I am not alone either.

I feel it is very important to fight the stigma surrounding hepatitis. Only then we will be able to talk about it and bust the myths. Only then we will be able to discuss ways to fight it on the ground. It is common in a conservative society to put a label on you as defective and exclude you from everything. For instance, marriage is still, by large, the union in this culture after which people have sexual intercourse and have kids; both occasions that can be possible causes of transmission of this virus. If, before marriage, a person is aware of their diagnosis, they can ensure that their partner is vaccinated and safe. However, in this society, there is also a prevalent culture of arranged marriage which makes this whole discussion almost impossible because so-called “perfection” is demanded. I wonder if submitting your hepatitis status with a marriage certificate was compulsory, would it help in data collection and early detection of this disease or would it encourage stereotyping. What if it was possible to vaccinate every child who starts school to be vaccinated against hepatitis B? After all, mandatory vaccinations are common in other countries. But what about children who can’t afford to go to a school? Can we link hepatitis B vaccination confirmation mandatory with every birth certification? This works in many other countries that vaccinate every baby born – we need to able to fight hepatitis B with a strong response such as this.

I also have an obsession with trying to understand this virus that is sharing my body. So my brain imagined a story to help understand how the chronic hepatitis B works. There are the good guys (liver cells) and bad guys (virus) who grew up together quite happily. Until one day, the good guys realized that these other guys are not from amongst us, let’s kill them. There is a battle and then there is collateral damage. What I want to understand is, if the bad guys aren’t harming the good guys, then why does the body start fighting them? And what is the purpose of their existence if they are not bad guys by default? Perhaps one day someone will help answer my questions. Until then, I’ll try to focus on the inevitable fight.

 

Hepatitis B Advocacy, Hepatitis B Prevention, News

Tackling Hepatitis B in Africa: The First Nigerian Hepatitis Summit

This is a guest blog post by Danjuma Adda, MPH, Executive Director of Chargo Care Trust, a non-profit dedicated to helping hepatitis patients in Nigeria. 

In 2016, the World Health Organization (WHO) set targets for the elimination of viral hepatitis as a public health threat by 2030 and provided a global health sector strategy (GHHS) on viral hepatitis for 2016–2021 that has since been adopted and endorsed by 194 countries. Nigeria joined the league of other nations to sign up to the GHSS and was among the few countries in Africa to develop firm goals towards the elimination of viral hepatitis. The goals were mapped out in a comprehensive framework that includes the National Viral Hepatitis Strategic Plan 2016-2020, National Policy for the Control of Viral Hepatitis, and National Guidelines for the Care and Treatment of Viral Hepatitis. An estimated 26 million Nigerians are living with viral hepatitis. A national hepatitis control program was created and a Technical Working Group for the Control of Viral Hepatitis was set up to help address the issues.

Despite these achievements, there has been very little financial assistance or investments by the national government towards the elimination of hepatitis. Gaps like low awareness fueled by myths and misconceptions, lack of available information on hepatitis, poor systems of health, high cost of diagnostic testing and out of pocket expenses for viral hepatitis treatment, low capacity of health care providers, and the proliferation of substandard treatment centres across Nigeria poses a challenge to the elimination goal of hepatitis in the country.

The First Nigerian Hepatitis Summit

To spur action towards hepatitis elimination in Nigeria, hepatitis patient groups and civil society networks organized the first ever Nigeria Hepatitis Summit in December 2018. The groups were led by Danjuma Adda, Executive Director of Chargo Care Trust. The goals of the summit were to:

1. Improve health seeking behavior among Nigerians through disease awareness and, as more people become aware of the disease, help them discover their status and encourage them to seek treatment as appropriate;

2. Increase local and domestic health financing, increase domestic, local responses, and allocate needed funds towards the elimination of the disease as more state governments establish state actions plans;

3. Increase engagement and involvement of the private sector in accelerating the elimination goal of viral hepatitis in Nigeria and;

4. Increase the capacity of health care professionals and improve health care systems to deliver quality viral hepatitis cascade of care in line with WHO and national guidelines.

The summit was held on December 3-4 in Abuja, Federal Capital Territory. Over 200 participants from diverse sectors attended including the:

* WHO’s Nigerian office

* State Directors of Public Health across Ministries of Health

* State HIV/AIDS Program Managers-Hepatitis is domiciled in the State HIV/AIDS programs at both national and state levels.

* Civil society and NGOs from 26 states in Nigeria

* Academia including the Society of Gastroenterologist and Hepatologist in Nigeria (SOGHIN)

* Private sector representatives

* Professional Medical associations

The Society of Gastroenterologist and Hepatologist (SOGHIN) led the technical faculty. SOGHIN made up 70% of the speakers. Other Speakers included: World Health Organization (WHO); World Hepatitis Alliance (WHA); Clinton Health Access Initiative (CHAI); National Primary Health Care Development Agency; Harm Reduction Association of Nigeria; and Representatives of States Ministries of Health.

Outcomes from the Summit

* Increased advocacy at state ministries of health to ensure state governments prioritize hepatitis cascade of care

* The engagement of private institutions to invest in the hepatitis cascade of care

* Efforts to enhance collaboration towards improving hepatitis cascade of care between civil society organizations and state governments

* Increased domestic financing is needed by state governments towards the elimination of viral hepatitis in Nigeria

* The World Hepatitis Alliance (WHA) UK is partnering with CSOs/Patient groups to build advocacy efforts for hepatitis C financing. To this end, WHA is supporting the development of a hepatitis C financing model for the engagement of state governments and private sector players to invest in elimination projects across Nigeria.

Looking Towards the Future

For the first time, government representatives from the state and national ministry of health, patient representatives, and civil society members came together to talk about the burden of viral hepatitis with the common goal of finding solutions to the pandemic. It was evident during the meeting that the lack of commitment and political will by the national government may cause Nigeria to miss the target goal of eliminating viral hepatitis if strong actions are not taken. Viral hepatitis must be recognized as a disease of public health importance in the country.

At the moment, the viral hepatitis cascade of care remains beyond the reach of the majority of Nigerians, fueling the spread of fake and substandard practices and the proliferation of treatment centres around the nation.

Almost everyone in Nigeria is affected by the scourge of viral hepatitis. Brothers, friends, and relatives have been lost to this disease. The conspiracy of silence across the nation and lack of strong will to address the pandemic remains a puzzle that we all need to solve.

Nigeria has what it takes in terms of financial and human resources to be the regional leader in the drive towards the elimination of viral hepatitis in Africa. What it lacks is the political will and commitment of government at all levels and the interest of private sector players to invest in the elimination of viral hepatitis in Nigeria. At the moment, other African countries are overtaking Nigeria on the path towards elimination by launching ambitious plans for their citizens.

If only we can get the attention and support of the private sector players and business moguls in Nigeria, the country will be on track towards the elimination of this disease and surpass the WHO target. If some of the countries wealthiest individuals contributed just a million dollars each to a National Hepatitis Elimination Project, Nigeria would see profound health benefits for the entire nation.

In order to attract support from partners around the world including pharmaceutical companies, the government of Nigeria must make a bold commitment and investment in addressing the challenge of viral hepatitis for its citizens.

The government of Nigeria must take the first step by making the financial commitment towards provisions for prevention, testing and treatment programs in the country by launching a pragmatic and ambitious Viral Hepatitis Elimination Project with clear targets to reach each year on prevention and treatment, including harm reduction strategies.

Hepatitis B Advocacy, Hepatitis B Prevention

Vlog: Lunch & Learn Session with Jefferson APAMSA

Join Michaela Jackson for A Day in the Life of a Public Health Coordinator as she takes you behind the scenes of Hep B United Philadelphia.

In this episode, the Hepatitis B Foundation joins Hep B United Philadelphia in the City for a Lunch & Learn session with Jefferson University APAMSA students.

Baruch S. Blumberg Institute